Month: September 2016

My love has this AWESOME smile!

It’s a smile that even if you’re having a bad day, seeing him smiling makes you smile. Try though I might, I can’t resist it.

Today, Dale was a little down. Because of a new boundary we set in place and the fact I’ve got no money in light of just recently switching jobs, we’ve been pretty much spending every night with my parents, and, even I admit, it is quite exhausting. So, when dropping him home, I noted to him that he seemed off. Dale being off means he almost becomes cold with everyone. That can sometimes be put down to him being tired or processing (today he did a run, so I assumed it was that), and very rarely it could be something has upset him. All I know for definite, is that he’s not smiling, and it can take a fair bit of effort to get him smiling again.

This is Dale smiling. It’s glorious, happy, cute and infectious! Everything in his smile means he’s having fun. Whether it be him telling an awful pun joke, talking non-stop about trains or music or even him planning some crazy venture. I absolutely love seeing the Dale-Smile. And he knows it!

Today we were watching Cold Case.

It’s an American TV Crime show, based around detectives who pick up cases that have gone cold to solve them themselves. Today was batting very close to home. (I also thought this may have put Dale off… turns out it was absolutely nothing to do with it).

The show was centered around the deaf community. A young boy who was deaf was murdered in a deaf school. The detectives interrogated old girlfriends (one hearing and one also deaf), teachers, best friends (also deaf) and even his parents (also deaf). It was revealed that the boy became deaf suddenly when he attracted an illness. The boy used to play piano and was very good at it. He loved being part of the deaf community. He then met a girl who was hearing and who also loved piano. She had come to the school to teach while serving community service for a DUI. They had a brief relationship.

It was then revealed that the boy had considered a Cochlear Implant, but there was seemingly very heavy opposition to it from him best friend and parents. His best friend seemed to regard having an implant as betrayal. His parents not thinking too differently. The hearing girlfriend supporting him because of her knowing that he wanted to hear her voice and also hear music.

At the end of the program, it was revealed that the boy did get a cochlear implant, his dad supported it and his best friend did too, but after the boy had received his implant and was playing piano, the best friend became jealous (the best friend had also applied but was considered an unsuitable candidate) and hit the boy across the head with a Metronome, right where the cochlear was placed.

Throughout the program, there was the constant theme of this world – that world.

One of the detectives even asked about the separation, one of teachers saying that generally those who speak the same language, band together and form a community. The detective then saying that Sign was hardly a language as it was just hand movements, clearly showing the gap between the hearing and the deaf. Nevertheless, the detective tried to learn ASL (American Sign Language) to try and talk to witnesses/suspects. However, it wasn’t just the Hearing Character making the gap. The best friend himself was putting a huge gap between the Hearing and the Deaf. The Parents were also doing this by [originally] not being supportive of the cochlear implant, saying that it would mean that the person implanted would belong to neither Deaf or Hearing world; becoming a ‘freak’.

Now, this isn’t an old program, and Dale and I know full well the views of Cochleas by both the Hearing and the Deaf. Some people believe that, if God wanted someone to hear, he would have made them hear. Some others believe that what you never had, you wont miss, and some would rather be deaf then a computer hear for them. It’s a sad reality that such a beautiful gift can cause so much war between two persons.

If Dale had decided that he didn’t want the Cochlea, I would have been in full support of it. It’s his decision. Would it have been harder? Yes. Of course it would have. It would have probably helped with my signing a lot more, but communicating and the simple pleasures of life wouldn’t have been the same. Am I thankful that Dale did accept the Implant? Yes. Definitely. Because it makes him happy. It gives him that independency that he needs but also allows him to enjoy his favourite hobbies.

I’ve just started a new job which is 100% different to the whole waitressing gig.

I’m now working as Centre Manager/Teacher/Teaching Assistant at a Learning Centre which supports children who are home schooled; either because they can’t cope with mainstream school because of learning difficulties or other various reasons. I work at two separate locations; one location I am a Centre Manager and at the other I’m a Teaching Assistant. One is technically more hands on in regards to interacting with the students, but because of the size of the learning centres, both are pretty much the same.

Monday and Tuesday were completely different from today, mainly for reasons of it being in a completely different location, the other being completely different students.

I have taught Chinese, assisted in English lessons, not so much maths or science lessons as I’m not that confident in them subjects myself, so I feel as much of a student as my students.

Each child has their background and each child has their reasons for being homeschooled.

And they are, undoubtedly, amazing kids! They are so involved and so eager to learn, that in fact at my centre, they want to get involved in teaching! Some are quieter than others, but never-the-less are definitely a part of the crazy goings-on at the learning centre.

At one of the Learning Centreswe have one student who I’m definitely looking out for.

Under the Child Protection Act I am not to reveal the gender, age, name or locations of where specific children attend. I’m also not to go into detail of their histories as that is purely their business.

They have Autism. For the sake of this story, I’m going to call them Patty. It’s a little more serious than Dale, as they physically cannot stand touch or even sitting next to someone. At first they were a little shy, but very soon started to get involved, joining in a game of Rounders, 1 Truth 1 Lie and many other games that we play. They wanted to be very involved, very often trying to answer all the questions in the lesson or wanting to assist the teacher by writing on the board etc.

At the end of the day, when the students were about to go home, we played ‘Duck Duck Goose’. Now, this game can involve touching as it requires a child to walk round a circle of other children, patting their heads saying ‘duck’ until they decide on one child, saying ‘goose’ and then they have to run around the circle, trying to catch the ‘ducker’. While setting up the game and explaining, I did have to double check with Patty whether they were okay to be patted on their head, which good on them, they told me no. So we arranged that the ‘duck’ would hover over Patty’s head instead of tapping their head.

It was amazing to see each student go round the circle, patting everyones head and when getting to Patty, seemingly without thinking just hovered over their head.

There was once in the game, when a younger child (a younger sibling of a student) didn’t realise and did pat Patty on the head, which I did see Patty’s face drop. I didn’t want them to leave the game so I did keep an eye making sure they were okay.

And absolutely fantastically, Patty stayed in the game.

We then silently communicated that when a younger child was the ‘duck’, Patty would move into the circle to avoid being ‘duck’ed which they were happy to do.

I really really hope I see Patty again, if anything to see them grow. They are an amazing child, not afraid to let us know what they need to go about their business. In a sense I admire them. I’m not sure whether I’ll see Patty tomorrow but hopefully definitely next week!

Well Done Patty!

The Learning Centre is definitely an amazing organisation to be a part of. At normal School, children can be so vicious and sometimes very cold to one another. Here, they have a mutual respect for one another, and easily accommodate each others needs. Mainstream School, children see the differences and pick on them. This Learning Centre, the children seem to see the differences, and go “okay, this person is different, and that’s okay!”

It truly is a fresh sight to see, especially when I was seriously bullied at school myself!

I guess one of the benefits of dating an Aspie, is that they are FOREVER loyal and faithful to one thing. That doesn’t mean they don’t experiment or cope with using other alternative subjects though.

Dale is a self proclaimed Tea Snob, and there is one tea shop which he is undyingly loyal to. He even has his own mug there that when he goes in, the Tea Baristas serve the tea in. This little shop is Bluebird Tea co.They serve all sorts of tea, matcha, green and even some of their own weird blends. Me being a Coffee drinker, I’m not really adventurous in tea, but Dale seems to love it. In fact, he testifies that Bluebird made him the Love Potion Tea around Valentines day about 2 weeks before Dale and I had our first date. He is somewhat adamant that the ‘Love Potion’ got him me (he knows it didn’t, but it is a change coincidence even I have to consider).

Today, we met up for dinner and during our wonderings through Brighton City Centre, we rocked up at Whittard, which is another Tea/Coffee place. As we were closing in, Dale near enough whispered “Don’t tell bluebird!”. Funny Boy! After buying the tea, he then went on to diss Whittard on pretty much everything, including their tea and big up Bluebird on pretty much everything. (Here, I would just like to point out that going to Whittard was his choice. Not mine!). I’m not even sure why he goes there?!

Regularly Dale reminds me that he can’t lie, and if he were to ever lie he would physically have the compulsion to admit it and tell the truth.

That’s why I call him Spock, his catchphrase should be “Aspie’s cannot lie!”. Today, Dale had one of these moments (separate incident to the tea). This moment sent him spiralling into a Panic Attack. Why? Because in a moment of being honest with me, he thought he had lost me and that I would leave him. It was basically a worry about his loyalty/faithfulness so I admit, what he admitted to me was hard to hear and it has taken courage to remember that he chose me, but it took countless times of me reassuring him that what he did was good and that I’m glad he was honest when he could have quite so easily have hushed up about it (it wasn’t too much of a big deal which is why it is was quickly handled).

I think it’s safe to say that the Cochlear Implant has been a true gift and blessing in both mine and Dales life.

Approximately 1 year ago, Dale had his Cochlear Implant switched on and his (fairly short) journey of learning to hear again started.

If you’re curious about the Implant, this is my testimony of being with an Implant Patient:

Dale recovering after operation with an Á La Carté Hospital Meal

In the month of May, Dale had finally received his operation date; 16th July 2015. There had been much build up of Anxiety for Dale regarding it, especially since there had been no noise about the operation for months, even though he had been accepted in January. When he was accepted, he took a while to reciprocate the acceptance, having anxiety of the chances of success and chances of hearing music etc. Good on him, he accepted. After he got his date, it started a whole new round of Anxiety about whether he will be well enough to have the operation, whether I’d love him if he came out the other side completely deaf (the operation seriously diminishes natural hearing, and in some cases completely destroys it) and again, whether he’ll be able to hear music.

If there’s one thing I could do over on Op-Day, it would be being able to be with him when he had his cannula (needle) put in. FYI, I’m a needle phobic so it probably wouldn’t have worked well anyway. He was taken away to the operation room and that’s it. Neither mine nor Dales life would be the same. 3 hours later, we were told he was waiting in recovery.

I admit it, I did cry when I saw him lying there after the operation. He was miles high on anaesthetic and morphine, so he wasn’t all there. He repeatedly asked whether he had the operation and whether it was done. He also tried to sit up quite a few times, which he really couldn’t do. I mean, imagine trying to sit up and do things when you have a concussion. That’s pretty much the same thing.

Doctors came along and talked to us (mainly me as I was the only one of us hearing and they had no Sign Interpreter for Dale) and explained the aftercare and recovery process. They also explained all the after therapy and the process of learning to hear again. Dale also wanted to pick a bone with the Anaesthesiologist because apparently they told Dale he wouldn’t dream, but he did, so the Anaesthesiologist lied. Oh my silly Aspie. Dale ‘claims’ he remembers saying that, but I honestly don’t believe him. He was higher than cloud 9.

It wasn’t long before he was wheeled into his overnight room. We met his nurses who would look after him for the night and the following morning. After relieving himself and returning to the bed, he proceeded to ask whether the surgeon had removed his underwear to which the nurse looked dumbfounded, then replied, “Did you not see them when you went to the loo just a second ago?”. Queue much laughter from myself and the nurse when Dale replied, “Oh. Yeah!”.

1 month later, the Implant was switched on, and Dale began his journey of hearing again. The results were pretty much instant! With some difficulty, Dale could follow conversation better than I had ever known him to. We still had to be patient, and not tire Dale out too much. If he pushed himself too much, Dale could back track all the work he and the audiologists had done and at worse, risk the success of the Cochlear. He began hearing sounds that he had never been capable of hearing before.

Around October/November time, Dale began practising music again. At first, Dale struggled, not because he didn’t like the sound, but because the sound was vastly different that all previous memory of music was distorted and out of tune. Songs he had written, which to his old Acoustic Aid sounded fine, suddenly became droning and horrible sounding. He reworked some of his own compositions to better sound how he imagined. Some he didn’t change, adement that he would learn to hear them how he remembered. I don’t think they still sound exactly like he remembers, but he has learned to like the sounds.

His confidence has sky-rocketed in the last year; he has changed jobs, started a Punk Band and started actively engaging in conversation in group situations.

The Cochlear Implant has drastically changed mine and Dales life for the better and we don’t regret a single moment of it. The Implant has opened Dales life up to so many possibilities; The Implant Company sent him a waterproof Processor so that he can swim without the need to remove the implant, a Mini Mic so that he can listen to his music directly, like headphones wirelessly (pretty much like a personal hearing loop).

Dale has filmed with the Hospital a testimonial video of his journey with the cochlear implant which tells of his struggles and highlights of having the implant. If you would like to see it, watch it below:

If I could put a list together of all of the things Dale was ever anxious about, it would be a mile long and probably repeat and contradict itself numerously.

Something that tends to be misunderstood is that Asperger’s is a cause of Anxiety/OCD. When I was first getting to know Dale, I was silly enough to think that. I wonder how many other people think that?

Anxiety and OCD is a completely separate diagnosis to Asperger’s, and not every Aspie has them. Dale just so happens to have the whole kit and caboodle. Dale and I both agree that he copes with his Aspergers very well, but that doesn’t mean he still doesn’t have the down days where he can become depressed, wash his hands 20 times in an hour, become anxious over very small things and sometimes have anxiety over them things over and over again.

He does have his bad days and it is very obvious when he is having a bad day.

Dale has his sign posts that let me know ‘I’m not Okay!’.

One way of knowing, is when he rubs his hands together. He used to do this A LOT! In fact, whenever I’d look at him he’d be doing this even if it’s a situation he’d been in before. Then about a year ago, he just seemed to have stopped doing it. Since then, I’ve only seen him do it once; Today (I knew why though. His Cochlea Implant had run out of battery so he was completely deaf… and if there’s one thing Dale absolutely hates, it’s being deaf!).

Another way of me knowing Dale not all there, is when he’s unresponsive. I don’t mean in the sense you can’t talk to him, but when he keeps conversation short. VERY short. When it’s very bad, you can hardly get a word out of him. There’s been times when he’s almost seemed to be given me the cold shoulder. Luckily, I know that it just means ‘I’m processing something’. Eventually he’ll open up to me (mainly when we’re alone in the car or we’ll sign to each other) and let me know. He’ll very often apologise for himself, so he does recognise when he’s being off. One thing I’ve never known him to do, is lose his temper though. He’s very very patient it seems with both me and himself (although I do think he gets frustrated with himself sometimes).

Dale doesn’t withdraw as much as he used to, mostly because he’s trying to force himself to be social, which, rest assured, I do tell him that if he needs to decompress he just needs to let me know and I can either take him home or, if needs be, explain to people if he’s shut himself down; playing on his phone or something. We haven’t quite got to that point yet, so he’s coping well, but I’ll be ready for when he does need to escape.

As mentioned, when Dale isn’t 99.99%, his Anxiety goes at 120mph with no break pedal. It’s almost as if his head searches for things to worry about and to over-exaggerate. When this happens, Dale becomes incredibly tired and again, a little offish (what do you expect when his brain hasn’t given him a moments rest?). Gladly, when he’s having a full on day with Anxiety, when he sees me in the evening I’m able to cheer him up; either by talking the anxieties through with him, or just taking his mind off of the matter. Talking it through works the best I find. Also, surprise gifts cheer him up!

It’s harder to tell when he’s depressed. Mainly because he tends to deal with that in private and I’ve only been aware of him feeling depressed twice in my 1 1/2 years of being with him. I’m not saying that’s the only time he’s been depressed, it’s just the only time I’ve been aware.

If I had any pointers to give to people…

If you’re around people with Aspergers often, I would definitely advise learning their individual behaviours. Not everyone is like Dale, who can be quite verbal with what he is struggling with. Sometimes it’s a matter of trust. At the beginning of our relationship, Dale wouldn’t tell me things because he didn’t want me to think him being stupid or not being a Man. Luckily, Dale and I are in the kind of relationship where trust is very important, but it still had to be earned. I had to prove myself to Dale. It did come easy, but not without some speed bumps.

When they need to decompress or zone out, unless they’re like Dale and don’t mind touch, I would strongly advise to not abuse the situation and give into temptation to hug them. Even with Dale, I don’t hug him when he’s zoned out, and I’m one of Dales ‘safe people’. I’m not saying he would reject my hug if I did, but it would neither help the situation or help him feel better. I limit my touch to either a hand on the knee when it’s serious, which seems to have similar effect to a hug but with limited touch, or when he’s being a mega butt-head (when he’s not completely zoned out, just having a moment) I’ll put my hand on his cheek. That helps keep the situation light-hearted. When he worries about my thoughts about him, I’ll kiss him. I keep to these 3 without really changing them about so he doesn’t have to try and predict what I’m going to do or read into what the touch means.

Keep it real! Don’t flap about with eloquent metaphors or spinning fantasy tales. When Dales out of it, he needs cold hard facts. Things he can understand in plain black and white. Me telling him tall tales of wishy washy hopeful dreams wont bring him back to me sooner. If anything, it will confuse him. Most of the time Dale will prompt my answers through simple yes or no questions i.e “Do I have enough money for this?”, “Will I get ill?”, “I touched… and I didn’t wash my hands, is it hygienic?”. Yes you do, No you wont, Yes it’s fine. Dale can understand that. Not “Well if you save up [x amount of money] and in a couple of months you’ll meet a little man in a green suit who has money and then sure you can afford that” or “Uncooked chicken will make you ill, and because the chef was well trained and all the hygiene laws were observed, I’m sure the chicken wont give you food poisoning” or even “E-coli can travel from toilet seat to your hands, and then if you put your hands in your mouth, then you’ll get e-coli, but because the toilet seat was clean and you only touched it quickly, I’m sure you don’t have e-coli and it’s likely you wont get ill”.

Aspie’s can tell the time, but they can judge the amount of time. So saying in a couple of months it will be fine is a poor choice of words. A couple of months to me means maybe 2/3 months. To Dale, it could mean next year or next month. The uncertainty wont help him either.

So yeah, Sorry, that’s a long one, but we haven’t written in ages and nothing much has happened, however in the next month quite a few things are changing and happening. So hopefully more posts 🙂

As ever, thank you for reading. We may start keeping daily blogs which will probably be shorter and simply tell the day to day happenings rather then a lengthly boring blog for you to read.